Rhianon's "Hearing Bucket List"

*** UPDATE 6/24/16
I don't know where time goes. That tumor they operated on? It started growing again. I recently finished 6 weeks of daily radiation treatments to try and kill the bastard. We will hopefully know if it worked in August, and can focus again on the hearing nerve tumor. In the meantime, I have side effects to heal from and more music to hear. Soon as I get that next surgery date, I'm planning the next trip. Thank you everyone.

*** UPDATE 11/8/15
Quick update in case anyone is checking how I'm doing. I got a good blindside on my last mri. A 2nd tumor in my head (that I had barely known about) has decided to cut in line and take precedence. Ugh!

Surgery is tomorrow. I'll deal with the other tumor (and take that 2nd trip) after the holidays. 

I'm in a good place.... no worries! No fear, just rolling with it. I'll deal with whatever happens. - Rhi

*** UPDATE 10/3/15
Wild. Everytime I think this is over, it comes back to life. The radio gig aired! And they even took the time to create this special page with me with a transcription. Aw!

http://www.kplu.org/post/faced-impending-deafness-woman-creates-bucket-list-beloved-sounds

 I'm still waiting for the official report of the last MRI, so I'm still cramming in as many "hearing things" as I can. Thanks for all the help you guys. - Rhi

So far on my hearing bucket list:
- Brandi Carlile at Red Rocks (Done!)
- A 2nd trip to a musical city (SF, Nashville or New Orleans). (I'll make this trip whenever I get a surgery date.)
- Seahawks game (Went to a preseason game. I'm so dissapointed! A lot of people were leaving early, no stars were playing, and I didn't get that thunderous applause that I wanted. I'd kill to experience the real thing.)
- More live music! (I've been lucky enough to see some of my favorite artists this summer. I've even gotten to thank a few of them. And oh hey look, Brandi is coming again. :))
- A beach trip (I want to hear the waves again). 
- Listening to all my fave music from over the years (Spotify!!)


*** UPDATE 8/20/15
We arrived safely home from Red Rocks :) AWESOME TIME, thank you. If you would like to hear about the trip, here you go! http://longistheday.com/thank-you-for-the-red-rocks-trip/ - Rhi

*** UPDATE 7/16/15
Just when we thought this was finished, it get's a second wind! A local radio station interviewed Rhi for a story that will be aired in Aug. Once this is online, We'll share the link here. Time to bump up the goal again, and make new dreams! A Broadway Musical in New York? A weekend on the beach? What would be the last thing you would want to hear? - Rhi



*** UPDATE 6/25/15
Insane, goal #2 made today. Wow you guys!! Time to do more items on my "hearing bucket list"! Any more funds raised for the rest of the summer will help make more of my list happen :) - Rhi

*** UPDATE 6/16/15
WOW... thank you all SO MUCH for your support. We hit the original goal and I'm making it to Red Rocks!! But this isn't over yet.... 

If we can reach $4250, I can do a 2nd trip.... visit somewhere I've never been, listen to more music, and achieve some of your suggestions for my hearing bucket list! (Ocean, fireworks, music festival.) - Rhi

*** UPDATE 6/10/15
If you were about to go deaf, what would YOU DO!?  What are your favorite sounds? What would you like to hear before going Deaf? Use the comment form below. If I like your ideas, I can add that to the list! - Rhi

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If someone told you there was a chance you could become deaf, what would you do?
Rhianon would go to a Brandi Carlile concert, and that’s what we’re going to do for her!

Rhianon has a disease called NF2, which causes tumors to grow on the nervous system. Brain, spine, the tumors can grow anywhere. One has already caused vision loss in the right eye. Others are on both the left and right auditory nerves. A third cluster has been found at the bottom of the spine.

So what do you do with a disease that causes such damage??
You make the most of what you've got, while you’ve got it. Enjoy life as much as you can, NOW!

The goal is lofty, $2,750. This is to cover her dream trip…… TWO shows! One in Spokane, and one in Colorado at Red Rocks Amphitheatre. Airfare, hotel, car rental, food, souvenirs, fees..... We itemized everything, and that was the number we came up with. If she doesn't hit that, she will happily go to one show, and live off of oatmeal for the week. Either way, this is happening!
Her girlfriend will be joining her, and they already bought ADA seating for the Colorado show (no falling off a red rock for Rea! She has balance issues).

Instead of being sorrowful, let’s go deaf with a BANG….she needs your help to celebrate it! Please donate/share this with your friends.  

From Rhianon:
There was a high chance of going deaf in my right ear 10 years ago while having PART of a tumor removed. The surgeons were trying to buy me extra hearing time by not removing all of it….and they succeeded. However, that tumor has since grown back, and I want it removed. My hearing in that ear will go along with it (my left ear is partially deaf, and not much of an asset).

While no date has been set yet, I've already spoken with a neurosurgeon. The ball is rolling and I'm hoping for surgery in the Fall.

Going deaf is pretty much a given with this disease, I’ve known this my whole life. Instead of being mournful about it, I’m grateful for the time I’ve been able to hear. I can do deaf. I know some ASL, have support, and plan to have a “I’m going deaf party” to celebrate it.

This surgery is MY choice. So why do I want it??

In your brain, the hearing nerve is right next to the facial and balance nerves. Once my tumor becomes too large, all three abilities will be affected. If my facial nerve is compromised (and it may already be), I won’t be able to smile. As much as I love hearing, I would miss my smile more than anything.

The loss of music IS going to be a hard blow to take. I used to be a musician until I started losing my hearing. Watching Brandi all these years was like watching a part of myself. Her music has always been there for me, and getting to hear it live once more in a beautiful setting like Red Rocks would be amazing. The Spokane show was added because it’s a large club….and I LOVE her sweaty club shows :0 (We don’t get those in Seattle anymore…she’s too popular.) I want one last summer of getting to play and enjoy music. I don’t have the funds to travel, so I would be grateful for the help.

*** Don’t be sad for me! I’ve known my whole life I was going to go deaf one day, I’m past being sad about it. Help me celebrate the time I have left to hear music instead. ***